Virtual peer support programme for carers of MND
RCT of virtual peer-to-peer support programme for carers of MND
This study is actively recruiting family/informal carers of people with MND. Read the recruitment flyer (PDF, 202KB) to find out more.
UK Chief Investigator
Louise Rose
Research summary
Providing care as a family member or friend of a person with motor neurone disease is challenging and may negatively impact the caregiver’s wellbeing. This negative impact can increase as the person’s disease progresses to needing support for feeding and breathing. Unfortunately, at present there are no studies identifying effective strategies to support these caregivers.
Peer support, an organised form of support provided by and for people with similar conditions, problems or experiences, is a strategy shown to help caregivers of people with conditions such as dementia. Peer support can be in-person; however, this may create problems for people with high caregiving demands, or social or living conditions preventing participation. Virtual peer support is more accessible and may be better than in-person peer support delivery. However, there are no studies confirming benefits of virtual peer support for informal caregivers of people with motor neurone disease at risk of or needing breathing or feeding support. Our study proposes to address this gap.
We will test if a 12-week virtual peer support programme developed by our team can improve caregivers’ mood and being able to manage and cope with their caregiving situation. The programme allows people to chat using text, audio, or video connections with a weekly group chat and discussion boards. We will recruit informal caregivers from clinics, services and organisations providing care or support to people with motor neurone disease. We will use a research method that enables all people that agree to the study, the chance to be in the programme. However, half of those that agree will only receive usual supports so we can compare their mood, burden and coping skills with people receiving the programme. We will ask people how they liked the programme and study which features are used and how often.
This trial is placebo-controlled. It is important to understand what this means. Click the links to go to the glossary of terms and read further explanations.
- What the chances are of you being randomly assigned to either an intervention group or a placebo group
- How long you would remain on this treatment allocation
- If the study offers an open-label extension on completion of the main study.
Current status
Active – recruiting
Recruitment target
154 participants
Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search)
Recruitment group(s)
Informal caregivers of an individual with MND.
Locations
Guys & St Thomas' NHS Hospital Trust Site open for recruitment out-of-area (participants can self-refer, see the recruitment flyer at the top of this page)
Dundee Site open for local recruitment only
Participant identification centres (PICs):
Brighton
Dundee
LOROS Hospice, Leicester
Stoke
Key dates
Recruitment open date: 7th June 2022
Planned recruitment end date: 2nd August 2024
Participant information sheet
Participant information sheet (PDF, 183KB)
Inclusion / exclusion criteria
Inclusion criteria
Age > = 18 years;
Family/informal caregiver of an individual with MND living at home who is being considered for or receiving any of the following (i.e., entering King’s clinical staging Stage 4A: nutritional support; or Stage 4B: respiratory support) (a) assisted ventilation (b) cough assist (c) gastroscopy and enteral feeding
Able to speak/read English;
Has access to a computer, tablet, or smartphone and the internet; and
Consents to participation (Note: in situations of social deprivation (i.e., no access to smartphone, tablet, computer and/or the internet) we will be able to lend a 4G enabled Android tablet).
NOTE: Caregivers may continue participation based on their own preference in the study if their family/informal member dies during the 12-week intervention. We will ask participants to notify both their mentor and the research team in this event. These participants will have usual access to bereavement supports available to them.
Exclusion criteria
Receiving active psychiatric/psychologist care identified through self-report prior to consent. Participation in other research is not an exclusion but will be assessed by the CI/research team for appropriateness.
Sponsor
King's College London
Study design
Interventional
Intervention
Prevention
Education or Self-Management
Psychological & Behavioural
Outcome measures
1. Hospital Anxiety and Depression Scale (HADS);
2. Positive and Negative Affect Schedule;
3. Zarit Burden Interview;
4. Pearlin Mastery Scale;
5. Personal Gain Scale;
6. Brief COPE.